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Self-management of Type 1 in hospital?

D

david4503

Well-Known Member
Messages
181
Type of diabetes
Type 1
Treatment type
Insulin
Greetings, first-time poster here. My question relates to two recent hospital stays here in. the U.S. Unfortunately, the quality of care for Type 1s admitted for other illnesses has not improved at all in recent years — at least here in the U.S. In fact, a few years ago, I needed to insist on self-managing my injections while hospitalized in order to maintain decent control. After my release I discovered a (pamphlet) PDF online from the “Joint British Diabetes Societies for Inpatient Care Group in collaboration with NHS Diabetes.”.

It appears that NHS, and possibly systems in other countries, are way ahead of the U.S. in allowing Type 1 diabetics to self-manage in hospital as long as they are capable of doing it reliably. I was hoping to confirm whether or not this option is what actually is available in the UK or elsewhere and whether this system is working well.

Thanks for any information you can provide. It really is a mess over here and the longer the hospital stay, the worse it is.
 
Welcome to the forums @david4503 Most of the UK forumites are asleep now, so I'll describe my experiences of T1 and UK hospitals, albeit a bit out of date.

Operations and anaesthetics (while out you're dependent on an insulin drip and the competence of an anaesthetist).

While in a ward (2 T1 pregnancies, a broken leg and an appendix). All last century (emigrated in 1999). I had my testing kit and injecting gear on my bedside table.

Basically, I did my own injections and testing. During pregnancy they had a kitchen area in the pregnancy ward, so I could use their food as needed or bring my own. When I had a severe hypo (during a failed induction) I woke up on an insulin drip and had an epidural. Once the baby was out I was back doing my own thing.

That worked well for me.

My T1 mother was in intensive care (multiple organ failure) in 2011. In intensive care they had her on an insulin drip and managed her doses (she wasn't really conscious). When she got transferred to a recovery ward she initially had the nurses doing injections (she was too weak to manage), which was a disaster. As she recovered her insulin needs went down and she started having hypos. The nurses weren't authorised to change her dose and couldn't contact a diabetic specialist for 24 hours. All she could do was decline a dose so she had the choice of no basal or not bolus (she found eating very difficult so opted for basal). Once the endo visited her he grovelled and told the nurses to give her whatever insulin she asked for. We put food for her in the hospital fridge, so she wasn't totally dependent on the hospital stuff.

So my personal experience of UK hospitals is that they are happy to let T1s self manage if they are capable, but the hospital food is pretty awful and mistakes can get made.

I'm sure some UK based T1s will post in their day time, hopefully with more up to date information.
 
Hi, Welcome, I had a heart bypass last year, they absolutely refused to let me self manage, I understand this for the days I was in intensive care and hallucinating on whatever they was giving me but, once I was ok physically and mentally they still had me on a ridiculous insulin drip regime that was never going to work for me, then was worried all the time because I was running so high. Finally listened to reason, let me do it, and everything was fine so I wouldn’t count on the UK getting it right. I may have just been unlucky.
 
I am in the US too. It really depends on the doctor and the hospital you go to. Some hospitals let you sign a waiver and let you do your own insulin and some don't. It has gotten much better. More people have been saying they have been allowed to self manage with no issues at all. I know where I'm at, the diabetic educator who is a type 1 and works at the hospital, has said that usually our hospital always lets you self manage. But that it can still sometimes depend on the doctor you get or have. But she said if you are there for any diabetic related cause, too low or high etc, forget it, they won't let you then. That sort of makes sense though. But really more people have been saying they haven't had a problem with self managing, as long as you are capable of doing so, they usually, always? want you to sign a waiver though because of liability issues. You are the first one I've heard about for a little bit now.

PS, Years ago and not that many years ago, everyone was in a tizzy because people right and left where getting their insulin taken away from them and being left at high numbers because they wouldn't be given insulin until after they ate etc. Then you could have your insulin, but not your pump. But now it seems like hospitals have gotten better about it. But some still don't like pumps. Your endo sending a letter over with directions on letting you control yourself goes a long way. But it is a fear many of us have, that if we end up in the hospital, the hospital will refuse to let us control ourselves. Stories like yours means it still happens!
 
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My experience in the UK has been limited but my understanding is that the hospital is responsible for all your medication during your stay - if you dose the wrong amount of insulin, they are responsible so there is some reluctance to let us self manage.
That said, I have been lucky and my kit has remained with me at all times so I can test when I want (in addition to the tests the nurses take and write down without much knowledge of what they mean) and dose what I want.
This made sense because I was lucid at all times (apart from during the operation when I was under general anaesthetic) so capable of making decisions.
To be honest, taking away my ability to dose is probably my biggest diabetes related fear. Only I know how much insulin I need - it's my body which is different to everyone else's.
 
I’m in the U.K. I had a knee replacement in February 2019. The anaesthetist collaborated with me, using blood tests to check that I’d not go hypo while under, and my kit, insulin and tester, was returned to me in the recovery room. I was able to adjust all doses and judge whether to decrease basal on the day of the op. During the 2 days I spent on a recovery ward, managing T1 was left to me. I kept glucotabs, lucozade and jelly babies in a bedside locker, insulin in a couple of frio. Staff fetched me biscuits and drinks if asked, even in the early hours.
The big problem was getting carb content of hospital food. It was clear that allergies were encompassed: gluten, lactose, nuts, etc but carb content was off the food provider’s radar.
 

You’re darn right, it still happens — unless there have been some major changes in the NYC area in the last four years. I highly doubt that since I would’ve heard something. New York is supposedly in the top tier for medical care but not for qualified Type 1s who want to, or more importantly need to, self-manage in the hospital. My experience is that they won’t listen and they won’t negotiate even with doctor’s instructions to cooperate with the patient. And forget waivers or any other arrangement, it’s strictly against policy. The only way I could do it was by using my own insulin and refusing to give it up.

I’d love to know where in the U.S. all these reasonable hospitals are and what protocols and policies they are following. I’d love even more to see these protocols and policies on paper. The American Diabetes Association has very carefully worded their guidance on hospital self-management; they haven’t endorsed it, nor has any major diabetes NGO in the U.S., to my knowledge. The UK, in contrast, seems to have adopted self-management whenever and wherever feasible. This subject needs a lot more discussion in America and I look forward to hearing more about it on this forum.
 
@david4503 , am I being overly cynical, or do you think the US policies are related to fears of litigation if something goes wrong?

Though it sounds that the hospitals @Marie 2 have been to just let her sign a waiver. I wonder if the variation is by hospital or state?

Next time I speak to a DN at my hospital I'll have to find out what the NZ/Aotearoa policies are for hospitals. (Hopefully they are not more than 30 years behind the UK in which case I am probably fine )
 

No, not overly cynical at all. Right on the money, in fact (pun intended). Hospitals in the U.S. are mainly privately owned by large corporations that are heavily motivated to increase profit and decrease risk. They see a Type 1 diabetic as a big risk, though much more so because of hypoglycemia than hyperglycemia. Whatever they may profess about keeping patients in reasonable control (and with all the studies showing faster, better recovery as a result), they fear insulin reactions like the devil himself. They’re happiest with blood sugars 180-250 and get nervous if it drops below 150 or, heaven forbid, 100.

Only doctors can make dosage adjustments and they are often unavailable or unwilling to make more than very minor changes to the original orders. Nurses are caught in the middle with no power at all. The same for PAs. Everyone is looking over their shoulder, afraid to get yelled at or disciplined. And the Risk Management department is in charge, not anyone who took the Hippocratic Oath.

My suggestion is to consult whoever you can who is in authority. Type 1s need to know where they stand before they set foot in a hospital. I argued with management (their messenger, anyway) for the first three days of my stay over who was even qualified to make dosing decisions. Clearly, they weren’t, I was, which is why they eventually gave up and let me do my thing.
 
I was in hospital for 9 weeks following my amputation , I also suffered. Kidney failure and was on dialysis for 2 weeks and I was in charge of my bs control I’ve been in hospital for shorter periods And have always left to m own devices ,
 
There is one big snag about the way the NHS allows type 1 diabetics to manage their bs levels in hospital. In my experience, we are given absolutely zero information about the carb content of what we are expected to eat.
In the case of ordinary fruit and vegetables, this is fine if you are experienced in estimating carbs, but some things, like soups, are more problematic. I have pointed this out to consultants who agree that it's not ideal, but seem not to want to rock the boat. On more than one occasion, I was brought insulin (after I have already eaten !) and had to tell staff I was testing and doing my own injections. This happened regilarly.. There seemed to be a lack of communication between staff and an assumption thst all diabetics are the same.
 
I'm type 2, insulin dependent and have just had 2 weeks in hospital for suspected PE which turned out to be a chest infection with added covid for the second week. I kept and self dosed all of my meds, including the insulin, but was meant to take them during the drugs round. As this could be as late as 11am, with a 5.45am wake up call, I'd usually taken them by then. My prescription clearly says 'up to 40 units, dependant on bg test'. When that was written, I was frequently hitting high 20s, I'm now nearer 10s, but they were still insisting I take the 40 units. I eventually got someone to come up from Endo and write 'has capacity to self assess and self administer' across the chart. It worries me that, if I'd been unable to do this, they would have jabbed the 40 units in regardless of my current bg level.
 
I think we type 1s should have the right to administer our own insulin given it is such a personal matter and pertains to your long term recovery and health with the big IF being If you are compus mentus and IF your treatment is inherently destabising your normal bg pattern e.g. major period of immobility or use of steroids with carb laden hospital food. Perhaps you can sign a disclaimer if you wish to take the responsibility. |To me taking insulin is as personal as choosing what I eat or wear and I wouldn't give that decision capability away.
To the latter point, if at all possible I would get my own food or skip a meal or two rather than eat the 'toast' , endless juices and jacket potatoes... Not all hospitals serve bad food btw but yes its hard to carb count and possibly not worth the 'nutrition' in many.
Pre surgery when nil by mouth I've gone low and in that case it was good to have hypo gels around as these were permitted pre general anaesthetic.
In the UK it is my understanding that because of the lack of specialist knowledge amongst general ward staff, the diabetic nurse gets called in to help with the practicalities. An endo isn't going to know more than you re your dosing regime but may know a bit about interaction between different drugs or likely curve balls from your treatment.
 
These are all very useful responses to my question. Much appreciated. Speaking from across the pond, I would say that Type 1s in the UK are fortunate to at least be able to have a conversation with hospital personnel about self-management. I can see that your system still has plenty of bugs but by comparison, ours in the U.S. is in the Dark Ages.

If you’re ever visiting here and have to be hospitalized, I would be prepared for a shock. Medical care here is, in other respects, pretty good. But if you’re being admitted for some condition other than your diabetes, expect that your diabetes judgment and expertise will be routinely ignored by people who desperately need it but refuse to admit that fact.
 
I have to say that I’ve been in hospital in London s few times for a couple of days and it’s been horrific. Been put on insulin drip which effectively removed any control I had over my blood glucose. Obviously still had my tester so knew I was completely out of range but couldn’t do anything about it. Raised with the nurses that I was high and was told to put my tester away as ‘you won’t be needing that here’. Watching and listening to the nurses who clearly knew nothing about type 1 trying to figure out what to do and not listening to me when I told them what needed to be done. Food, as others have noted, just awful in all senses …would never consider it healthy to eat like that at home. On one stay I just didn’t eat for almost 2 days in the end because I was already sky high from the poor management of the insulin drip and they were expecting me to eat processed white bread with jam etc. That really irritated them and I was told ‘someone from the diabetes unit will be coming to sort this out’ but of course no one ever came. Actually I would have loved to have seen someone who knew what they were talking about!

Overall I’ve had a very good experience of the NHS and been very grateful for its existence. But hospital stays with overworked nurses who don’t have the time or the training for type 1 diabetes are a real issue.
 
Yes, if they send for an in-patient hospital DSN, it is likely to be a minimum of 24 hrs, perhaps two days, before someone turns up. Of course, they don't know you, have very minimal information about your normal treatment and are used to being sent for whenever any 'awkward' situation arrives with a diabetic on insulin, about which the general nursing staff know nothing.
After a brief conversation with me, the DSN has always told the ward staff to leave me to sort things out for myself and instructed that I should be discharged on the same treatment as when I was admitted.
In order to get out with reasonable BS levels, I have had to pursue the exiting breakfast trolley down the corridor to get more toast, not eat the desserts routinely provided, top up with my own supplies etc depending on what my BS was doing at the time.
My BS is always high in hospital, unless I'm hypo because of being misinformed at what time a meal would arrive, causing me to inject too early. I find it impossible to keep things stable because of stress, lack of exercise and badly-thought out meals.

I agree with you, Curly.
 
Maybe I should amend my previous comment about the U.S. being in the Dark Ages in comparison to the UK. On the one hand NHS has a policy that allows for self-management but on the other it seems like hospital personnel are not overly concerned about the consequences to them of not providing decent diabetes care where self-management isn’t happening for some reason.

At least over here, they have some fear of being held to account for their actions. Maybe that’s an advantage with privately owned hospitals as opposed to a government operated system. Neither hospital system is looking good to me right now in terms of diabetes care. I’m wondering what the situation is in some other countries.
 
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